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Sample Advance Directives

Sample #1

Our DNR states.   Dear Dr. (Dr.'s name)

(Your child's name) suffers from Hydranencephaly. His condition is thought to be fatal, although the length of (child's name) life cannot be determined at this time. With full awareness of (child's name) limited life expectancy his parents have elected to continue to make his life as normal as possible at home. Should (child's name) die at home, cardiopulmonary resuscitation should not be attempted. Neither isi t necessary for his body to be taken to the hospital at the time of death. The family resides at (your address).

For further information, please contact (your Dr.'s name at whatever hospital location). 

"My husband and I have both copies of the DNR order and we have the choice to use it or now. The Drs have told us to use our discretion. Basically if we choose to have (child's name) life saved, we obviously would determine it on the situation. We have full control."

Sample #2

This is our government's advance directive form for children.

On the first page is name and personal info like that.
Then:
A. Cardiopulmonary Resuscitation (the instruction below applies only should the child have or develop a terminal illness or be in a state of permanent unconsciousness)
1. Do not resuscitate (no cardiac compressions, endotracheal intubation, advanced airways management, etc)
2. Initiate basic and advanced cpr 
3. No decision about resuscitation is made at this time.

If the Dr checks #1 then there is a signature at the bottom with a date when this directive expires (it needs to be reviewed every 3 months I believe)

On page 2
B. Levels of intervention-in the event of an irreversible (irreversible is underlined in the original) life threatening illness leading to imminent death or of natural end of life, direction is given to provide the following: (indicate 1):

Level 1
: Do not transfer to Hospital (supportive care only (ie; nursing care, pain and other symptom relief, oral nutrition and hydration, psychological and spiritual support)

Level 2
: Do not transfer to hospital  Therapeutic measures and supportive care without transfer to an acute care hospital (includes measures from #1 as well as medications such as diuretics or antibiotics if indicated.) No transfer to acute care hospital unless adequate comfort measures cannot be provided.

Level 3:
Transfer to acute care hospital if necessary but excluding admission to an intensive care unit.

Level 4;
transfer to acute care hospital with maximum therapeutic effort and if necessary admission to the intensive care unit.

5.
No decision about degree of intervention is made at this time.

C. Other specific health care instructions:
For Kayda when we realized her life would end in the near future we specified the following:
1.All medications to be continued
2.Tube feedings as tolerated
3. Only cardiac arrest and respiratory arrest are not to be               treated-all other symptoms/conditions are to be treated aggressively.
4. Comfort is primary concern.

This form is what we filled out about 2 months before Kayda died. Prior to that (the form wasn't developed until near the end of Kayda's life) the boxes indicating maximum treatment would have been checked.
 

Another point of view

This is how one family describes their decision making process when it comes to critical health care decisions for their child with Hydranencephaly. It is written by the Grandmother.

"My daughter has been told - as everybody with an ear to listen "take her home...she should die before the weekend is over!!"  Well, for Sarah we have a 'kind of' directive.  We always take her to the same hospital---Mercy Hospital of Pittsburgh.  We know EVERYBODY on the peds floor from Housekeeping to
The Head of Peds NICU.  Dr. Howard, (he has put us all on a first name basis since Sarah's first 'visit' to the NICU unit) knows our feelings and he agrees with this....as long as 'we' are doing things FOR Sarah then ok! Once we start doing things TO Sarah - well that's when we DRAW the line

This does NOT mean Sarah doesn't go on a respirator - if she has pneumonia and they need her to completely 'save her energy' to heal....they will put her on the respirator.  Then she does NOT have to concentrate on 'breathing' &'getting better'.  The breathing at that point is done FOR her! 

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August 16, 2001- January 12, 2005

This website is funded in loving memory of Jason S. by his mother Kammy

The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly.

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